Patients with a self diagnosis of myalgic encephalomyelitis

BMJ 1995; 311 doi: http://dx.doi.org/10.1136/bmj.311.7011.1021 (Published 14 October 1995) Cite this as: BMJ 1995;311:1021
  1. Charles Shepherd
  1. Honorary medical adviser ME Association, Stanford le Hope, Essex SS17 0HA

    EDITOR,--S J Hurel and colleagues should have checked their facts more thoroughly before making such a generalised attack on the content of literature produced by the two support groups for patients with myalgic encephalomyelitis (ME).1

    The ME Association does not believe that candida albicans is involved in the pathogenesis of the condition. Our booklet Guidelines for the Care of Patients states that “no reliable scientific evidence has ever been published to support such a link” and that “consequently, anti-candida regimes involving highly restricted diets, probiotics and antifungal drugs cannot be recommended.”2 Equally, we repeatedly warn our members about the serious dangers of colonic cleansing (particularly in relation to the risk of unhygienic operators transferring gastrointestinal pathogens) and advise extreme caution when consulting herbalists or buying over the counter herbal remedies. If we really were producing literature that contained pseudoscientific nonsense and advocated dubious forms of alternative therapy I doubt whether the Department of Health would be providing funding to expand the work of our information department.

    Had the authors checked with our booklet they would have found that we are not in favour of self diagnosis and strongly recommend consideration of nearly 50 physical and psychological conditions that can present with chronic fatigue as the principal clinical feature. In this context pituitary tumours are specifically mentioned as we are aware of at least two other cases similar to that reported by Hurel and colleagues in which misdiagnosis occurred. Furthermore, our literature emphasises that “significant or progressive weight loss is not a normal feature of ME, and where it occurs alternative explanations (eg hormonal) should always be excluded.”

    Finally, I am surprised that a group of endocrinologists, while correctly pointing out that hypopituitarism can produce some clinical features similar to those of myalgic encephalomyelitis, find no significance in the fact that a growing number of published research studies report disturbances in the funciton of the hypothalamic-pituitary axis--particularly involving hypocortisolaemia3 and resistance of type 2 steroid receptors4--in this particular chronic fatigue syndrome.